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This text is being provided in a rough‑draft format. Communication Access Realtime Translation (CART) is provided in order to facility communication accessibility and may not be a totally verbatim record of the proceedings.
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>> NILI BROYER: Good morning, everybody. So after a great first panel, I’m excited to come to the second panel, the keynote panel, and my name is, I’m a disability students in the disability studies here at UIC and also a member in studies to the. With us today is very influential speakers, how to shape and what we may call disability rights, disability justice, and social justice at large. And we ask them to share with us their experience and thoughts on the subject of justice, disability, and creating institutions. So I will like to present, and I’m honored to present, the three speakers for today. Lex Frieden is professor of biomedical informatics and of physical medicine at university of Texas health science center at Houston. He’s also director of the ILRU independent living research, training, and technical assistance program at TIRR memorial Hermann hospital.
He has served as chairperson of the national council on disability, president of rehabilitation international, and chairperson of the American association of people with disabilities. Frieden was instrumental in conceiving and drafting the Americans with disabilities act, the ADA. And he is with us today on Skype. Hi, Lex.
>> LEX FRIEDEN: Hi.
>> They can see you. And the second speaker is James I Charlton. He’s the executive vice president of Access Living in Chicago, and a research assistant professor in the department of disability and human development at the University of Illinois at Chicago. Charlton’s research examines the relationship between oppression, and specifically disability oppression, and resistance empowerment, including veiled acts of resistance. He’s a frequent lecturer in the United States and abroad on many aspects of disability and the disability rights movement. He is also the author of nothing about us without us, disability oppression and empowerment. Yes.
>> AUDIENCE MEMBER: Woo‑hoo.
>> JIM CHARLTON: I have one fan. (Laughter).
>> You have more, but you have one.
>> JIM CHARLTON: I’m so disappointed. (Laughter).
>> Last but not least, Roderick A Ferguson, is a faculty in the department of African American studies and gender and women studies at the University of Illinois at Chicago. His academic interests include African American literature, queer theory and queer studies, classical and contemporary social theory, African American intellectual history, sociology of race and ethnic relations, and black cultural theory. He is the co‑editor of the book series called difference incorporated and the anthology, strange affinities, the gender and sexual politics of comparative racialization, and from 2011.
In addition, his most recent book is the reorder of things, the university and its pedagogies of minority difference. And we will have a free round of questions every time the three of you are going to respond. We have seven minutes for every question for each of you, and let me start with the first question. What is your understanding of social justice, and if and why it is important to promote all the disability studies. Let’s start out with that question.
>> LEX FRIEDEN: Well, I’ll try to address the question. My first reaction is to that when I saw that was this is kind of an interesting subject for the University of Illinois at Chicago. The first time I was introduced to social justice was when I was serving on a committee representing the U.S. department of labor at the organization of economic development in Paris, France. And I was there talking about making a living by people with disabilities and the importance of promoting opportunity, the importance of people with disabilities having the opportunity, not only to take part in the mainstream of life in their communities, but also to take part in the workplace and to be a part of the whole society. And I was speaking about that from the standpoint of nondiscrimination and equal opportunity. After I talked for a little bit, they passed the microphone around, and one of the representatives from ice land began to talk about the subject matter. And this particular representative didn’t seem to be interested in my notions of opportunity, but more interested in the notions of, he called it social justice. And he talked about people who were homeless, people with disabilities who were disenfranchised and therefore not part of the society. He talked about people who were essentially outcasts from the society. And his description of the subject matter really showed me there’s another paradigm of disability in the world outside that that we expect to find in the United States. So here I was pretty well steeped in disability rights and independent living, yet learning that in Europe and in other parts of the world, the concept of social justice was an expanded one, one that expanded well beyond that which I was familiar with here. So I think social justice to me in the context of the United States really does mean equal opportunity. And however, I will acknowledge that in the broader context, it extends all the way to issues about rights, the health care, rights to education, rights to housing. Later on when I have to develop a proposal, new and convention on the rights of people with disabilities, we essentially expanded our perspective of social justice from that that was focused on the competitive paradigm in the U.S. to a more progressive view that was representative of the rest of the world. And I think you’d find that social justice described in the broader sense is really adopted by the UN convention on the rights of people with disabilities.
>> Thank you. And Jim, would you like to continue?
>> JIM CHARLTON: Good morning. First I wanted to say thanks to the organizers of the conference for putting this together and also for inviting me. When I think of social justice, I think of it as three different things. I think of it as a state or a condition. I think of it as a goal, and I think of it as a process. Within that I posit three elements that constitute state or condition of social justice. One, everyone is of equal value. Two, everyone having a life worthy of human dignity. And three, equality among all people, equality understood as attending equally to everyone’s different needs, not, for instance, treating everyone equally.
The first one comes from many of the articles I’ve written on commodification valuation where I argue that under commodity production or capitalism, everybody or every body and everything is valued differently. Based on their or its capacity or perceived capacity to produce surplus value or produce profits.
The second comes from Martha Nussbaum’s book, frontiers of justice, the ability theory, frontiers of justice, disability nationality and species membership. And the third comes from Terry Eagleton’s book, why Marx was right. So from these starting points, I want to make six claims about social justice. One, I believe social justice is unlikely. It’s not impossible, except under the rarest of circumstances, considering the way in which value works in today’s world, the dominance of value or valuation. Two, in many ways it seems to me the question isn’t social justice but social justice for who? The insider or the outsider? Believe me, the insider has all the social justice they need.
I reject theories of justice that center notions of impartiality or neutrality and a unitary moral subject. I start when I’m thinking about social justice from the point of view of excluded groups. About decision making, cultural expression, and division of labor. Most justice theorists assume and homogenous public. I don’t want to assume that. I reject that the public is homogenous. They also fail to consider institutional or structural arrangements for including people, or excluding people, not culturally identified with white, European, male norms and privilege. Power relations, or more probably actively unequal power relations. Social justice is a struggle between oppressed groups and privileged social groups, especially what I would call the ruling class that lives on oppression, especially exploitation. Three, if so, meaning social justice is impossible, why do I fight for it? It’s a worthy goal. Something to build social movements around, something that a lot of people want or believe in. It’s fair, whatever fair might be. And it provides an adequate account between the values of self‑determination or self‑realization, on the one hand, and community on the other. It seems to me the fight for or struggle for social justice centers social groups and gets away from individuals. Four, as a political project and as a process, I think the struggle for social justice has to be a inclusive participatory process that is radically egalitarian and uses self‑determination as its center. And that recognizes that some people or some groups will win while others will lose. Social justice is a process, it’s not a thing, and it’s a process of gaining more social justice. Five, you cannot promote, or we cannot promote social justice in a vacuum, much like disability rights. What is the relationship between social justice and disability justice is problemetized in the struggle for justice itself. And six, I’ve argued in many places in nothing about us without us, but also other articles, that justice not only has to center on social determination, but it has to develop a politics and program around it where people are, groups are, not only demanding but fighting for control of what they need. Thank you. There, six and a half minutes.
>> RODERICK FERGUSON: Thanks for organizing and inviting me. In terms of my own definition of social justice, I would say that it hinges on two senses of redistribution. One is a sense of redistribution that really comes from the theorist who talks about redistribution in terms of the change of meaning of things, you know, the sort of up turning of the sensible, the sort of taking for granted, the assumed meaning thing. And so this gets at for me redistribution as a process of changing the value and the meanings of something, of communities, of people, you know. Jim was gesturing toward this in his remarks. In an effort to disrupt the everyday meanings of especially forms of minority difference. You know, whether we’re talking about race, whether we’re talking about sexuality, whether we’re talking about class, whether we’re talking about disability. Now, the other sense of redistribution for me is a kind of classical political sense of redistribution, and that is the sort of Marxist and revolutionary sense of the category of redistribution. Redistribution has to be about creating spaces for the pathologize for the maligned, for the glad handed, the minority. This sense of redistribution calls for a conscious and deliberate change in the social and institutional make up of things. So here we can kind of see, you know, we can go back in time and reread our linen. It is a sense of, you know, politics has both an intellectual and a socially transformative, in depth, right? Now, for me, these two senses of redistribution are not unrelated. You know, I’ve always thought that a paradigm shift in how we think about minoritized people necessarily attend a social and institutional shift as well. You know, think of the great ethnic studies, women studies movements of the ’60s and ’70s, one of the first things that students, activists, scholars did was to create new syllabi, right? And then what followed that, so the creation of new syllabi, meaning then the reorganization of knowledge for different fields and also the creation of different types of knowledges and the burden of different types of people. That was then tied to the insistence that institutions had to change to create spaces for those folks who were previously excluded, right? So again a kind of intellectual shift, then necessitating an institutional and social shift. So those for me are, you know, part of my own sense of social justice. And I think your next question is to disabilities, so ‑‑
>> No, it’s the same question.
>> RODERICK FERGUSON: All right. Same question. All right. So disability justice for me has to presume both these senses of redistribution, a change at the level of meaning and a change at the level of social and institutional make up. So, you know, one way of thinking about this would be also if you took like rose Marie tomorrow son’s showing your bodies as a sort of first sense of redistribution, what does that then necessitate in terms of an institutional change or make up, right? And I would mention Rosemary but she’s actually one of my undergrad teachers. So you can’t have a change in the meanings of disability without the critical presence of disabled folks themselves, right? So again, a reorganization of knowledge, that is dialectically tied to an organization of social and institutional possibilities where disabled people are concerned, right? So for me that is the exciting adventure about social justice. How it requires both a kind of intellectual and epistemological, but then should activate us to figure out how should institutions in social settings change to match up with that intellectual reorganization.
>> Thank you. We will continue with the second question. What does coalition mean to you? Can you please share with us part of your own experience of working within a coalition? Lex, do you want to start or anybody else likes ‑‑
>> LEX FRIEDEN: I’ll be glad to do that. I think we should reverse the order, having these scholars speak before I do because I’m inclined to talk more about the practical applications of the brilliance that they’ve described here. Jim Charlton is one of the most accomplished disability scholars in my generation, and what he’s contributed to the literature, and particularly the history of not about us without us, it’s really significant. And Rod’s broader sense of social justice gives us a great background for discussing coalition, I think. You all may be interested in an article that was just published in the Houston law review that I did called roots of the movement that produce the ADA. And that article is all about coalition. And coalition building. The ADA really was a product of at least two decades of organizing by people with disabilities. It was based I think largely on the movement that produced the civil rights act of 1964, but perhaps more significantly, at the time, on the anti‑war movement that sprung out of the Vietnam war. And the women’s movement came from that and so did Ralph Nader’s consumerism. This was funded largely by people’s experiences of disabilities facing discrimination around the country in different places and Roberts in California, Judy Newman in New York, myself at Houston and at that time (inaudible) and other folks as well. And we all began to meet and share our experiences and as a result of the work that we were doing in local communities, we decided there would be a greater power to our movement if we were to coalesce and therefore we started the American coalition of persons with disabilities in 1974. The first formal meeting was in 1975 in Washington, D.C.. in building our coalition, which we thought was necessary to reach our objective of equal opportunity legislation and nondiscrimination law, we had to deal with existing organizations. Among those organizations in the disability movement were some very powerful, very well funded groups like the national federation of the blind, the American council of the blind, the national association of the deaf, the paralyzed veterans of America, and so on. And we were concerned that these legacy groups, which had all the money and they had all the recognition, we were concerned that they would dominate the discussion. And we didn’t want that to happen because that would single disability, single focus organization. So we built our coalition around the model with those groups that had representation and to some extent representation based partly on the number of members that they had in their organization. But we also built a roles for region and state coalitions, and we provided incentives in the organization for those groups that came together into regional and state coalitions and our baseline membership were local organizations. And it was interesting to see how people work politically within the coalition. They learned a lot about politics internally before we stepped outside the group. For example, in Houston, we organized five local organizations. They were paper organizations. They were incorporated. They had mission statements. They were made up of people with disabilities, and the reason we did that was so that when we went to the national coalition meeting, we had five folks and not one from our community. Five votes made us as powerful as the national association of the deaf. When it came to counting votes because they too had five votes since they were a national organization. We learned a lot about politics and we learned a lot about negotiation. And later on, we expanded our coalition to include groups of women and groups of African Americans and other minorities. I can give you another personal experience to help you understand how you translate this issue of coalition and social justice to a broader population.
In 1968 ‑‑ sorry ’78. 1978, I was a delegate to the Democratic state convention. And I wanted to be a representative of the ‑‑ I think it was Mr. Mondale who was running for the presidency against president Reagan. It could have been ’79. Sometime in the late ’70s. I went to the coalition, and I was representing people with disabilities. That was my platform. And I made it all the way to the state convention. At the state convention, a caucus met on the stage of the auditorium. The stage was not accessible. I could not get on the stage to join the caucus meeting. I went to the foot of the stage, in front, and I started complaining by myself how can you have a representative at a meeting without all of the delegates present? And the chairman said, well, it won’t make any difference. We’ve already organized the vote. We know who the slate will be. And I said, but I’d like to participate in the discussion and I’d like to nominate myself. And the chairman said, that won’t be necessary. We’ve already got the slate filled. Well, I wasn’t happy, and I just sat there and I stared and a few minutes later, three women came up and stood next to me. And after that, four more women came, and after awhile there were 12 women and myself at the foot of the stage pounding on the stage causing a great commotion. And I learned that these women represented the lesbian front in the Democratic party and they all had decided, the ones that were on the stage came off the stage. Other women from the women’s movement came down and joined me and before it was over, the chairman actually had to give up his seat to the state convention for me so that there would be enough slots available for those who wanted to be elected.
It just shows you that coalition of practice actually works. It worked for the disability movement and it worked in politics in 1979. Thanks for giving me the time.
>> JIM CHARLTON: Gee, thanks, Lex, for those kind words that date us back to the late 1970s. (Laughter).
>> LEX FRIEDEN: I’m sorry. For the ’60s.
>> JIM CHARLTON: Yeah, you’re even older than I am, maybe.
So in addressing the subject, I guess I can divide it into two parts. First off, there are these coalitions in which disability activists and the disability rights movement works within on the coalitions, other broader coalitions. The other is the coalitions within the disability rights movement itself, right? And they’re different, and they work differently. The challenges are different. I think there’s some similarities, but the challenges are different. One thing that happens in both are both kinds of coalitions are messy. Just because they’re messy doesn’t mean that they shouldn’t engage in them or work in them. In fact, just the opposite. We need to work in both these kinds of coalitions. I’m going to restrict my remarks to the disability movement and within the disability movement. I want to give like maybe three examples that speak to strategic differences or strategic disagreement, orientation, political orientation within the movement, and orientation around organizing within the movement. So the first one is this idea of strategic disagreements within the movement, within disability rights movement. In many ways, this is a natural thing. A lot of people get all upset about it. Oh, there’s so many differences. Well, that’s the case in all social movements. In some ways it’s helpful, in some ways it’s problematic. Because these reflect different political or ideological tendencies within the ‑‑ and all movements should hope to have a variety of different political or ideological points of view anyway. Nevertheless, these raise their ugly head at times in movements that have a lot of problems. So within the disability rights movement, there’s all sorts of issues for these disagreements or different points of view arise. Around health care reform, around education, around housing, where political and class orientations informs one’s perspectives or activist perspectives on how expansive the problem is and how expansive the solution needs to be.
A good example might be education. Most disability related activists and demands involve equal access to education. We want education just like everybody else. We say that students with disabilities should be educated in the regular classrooms. Well, progressive and leftist within the disability rights movement will go further. We say the entire educational system, especially in urban areas but we can say this all over, and especially where race and class are crucial informants, is a mess. That the overall education system is a reflection of the overall priorities of the system, and that most students are getting a poor education. We say that inclusion and integration is just one of the fundamental structural change that needs the current education. Essentially quality of opportunity and education is a very limited demand. So then there’s this idea of differences within the disability rights movement in terms of control and orientation of the movement, Lex talked about this. For example, a host of individuals from social service and government backgrounds have made a career out of those programs, special schools, rehabilitation agencies, clubs, and so on, that have been set up for people with disabilities, not by people with disabilities. As activist began to demand a central role in all the decision making regarding disability and also demanded the disability movement embrace the civil rights agenda, antagonisms developed. The old guard types rejected the politics of the young movement and this is ‑‑ was the case in the early 1980s and certainly still is the case today. The politics in the main of the disability rights movement then subjected those forces to a certain kind of criticism. It hurt a lot of people’s feelings and drove some of those people out of the movement for better and for worse. These kind of divisions are complicated, especially if you want ‑‑ you’re starting from little and especially if you’re starting from a community that’s disappeared or a very big minority ‑‑ a very big minoritized community. For example, the role of parents of disabled kids. Parents of disabled kids have a long history of advocacy in some fields, especially in education. They believe they have a moral authority in this field, mainly because they have kids, and maybe themselves, have put up with so much shit in the education system. Obviously parents play a vital role in education at all levels of education, but their orientation and the orientation of the disability rights movement often diverge. Many disability rights activists, for instance, have come out of segregated schools. They know that those schools need to be closed. These schools, if they were to be closed, would not be closed without a certain risk. Disability activists, whatever the particularities of the disability movement, sees a larger people. People with disabilities must be integrated into everyday life with or without risk, with or without support. Bob Jenner talked about this in an earlier presentation about risk. Parents most often do not buy into this business of risk for dignity or risk because they have too much to be risked.
The third example I give you around this is the way in which CILs or centers for independent living have developed over the years. Now, centers for independent living started less than ‑‑ and I can go back to this, to the late ’70s, you can go back to ’72, but let’s say even to the late ’70s, early ’80s, that’s when I became involved in CILs. In the very early stages, CILs were a very radical departure from what was. And what was mainly these government agencies that I talked about, social service agencies, that I talk about that other people have also talked about. And over the last 30 years, there’s much ‑‑ there’s a lot of good news to report. There’s been a lot of progress. That’s the good news.
The bad news is that for the most part, our community is still more or less incredibly marginalized, extreme isolation, rampant unemployment, poor education, continuing discrimination, and lack of views, on and on and on. The fact remains that people with disabilities, not only in the U.S. but everywhere else, are still the most marginalized sector in society. How is the CILs evolved over time, as progress has been made, referring lots of individuals but not for the group. The tendency has been within CILs to become more and more conservative. And this is the problem. I’ve written about this problem in many places, but I want to kind of close this section with a piece. Time is up. I’ll get to that in the next question. (Laughter).
>> RODERICK FERGUSON: All right. My first experience with coalition actually came when I started as a graduate student at the university of California, San Diego. And this was 1994. And I was coming from Washington, D.C.. I had recently graduated from Palatine university. And there was this initiative on a composition, on the California ‑‑ not California ‑‑ ballot. And it was this proposition, proposition 187, which was the proposition that said that immigrants and their children would not have access to public education, health care, what have you. I thought it was the most absurd thing in the world, right? And I thought that oh, there’s no way this is going to pass because it’s so fascist. I mean, it has no (inaudible). And then I thought where the helm I, right? So that was 1994. In 1996, there was another proposition. Proposition 209. And that was the anti affirmative action proposition. Well, that passed. And so what I saw in San Diego at the time was a campus made up of very visible Chicano students, Asian American students, white students and a small percentage of African American students. What came about in response to the passing of 187 and 209 were the ‑‑ these amazing coalitions between those groups. And so that also began to sort of shape my own sense of what it meant to be a coalitional person. Coalitional political subject. This was also the moment after sort of national liberation struggle in the ’60s and ’70s. It was the moment in which you saw the emergence of a kind of post colonial and women of color feminism of that campus. So particular, you know, folks like Lisa low in Asian American centers. Lisa, in Asian studies, Rosemary George in post colonial studies, all of whom were asserting the needs for students and faculty to form coalitions but not to presume that coalitions were about putting together one monolithic group with another monolithic group. So part of some of their own feminism intervention goes back to a bit of what Lex is getting at, was to get people to see this heterogeneity in those groups so what was taking place was the sort of coming together of groups constituted by heterogeneity. So it wasn’t simply that the coalitions were about sort of producing he diversity between groups but also observing the diversity within those groups. So I became a part of efforts to try and arrest some parts of affirmative action after having been devastated on campus. Other friends of mine did work in the Philodoros movement to support, especially Mexican women who were disenfranchised by the emergence of NA pH TA, you know, things like that. It put me in the position of always trying to be the student to ‑‑ you know, jack Alexander has this nice phrase in which she says, you know, we have to become fluent in each other’s narratives. And so there was a way in which the kind of coalitional work that was being produced at that moment was really giving me a (inaudible) in how to become fluent in people’s narrative and help them create narratives and also allow me to create my own narratives, right? And so that was something that really informed my encounter with disability studies as a sort of fully constituted field when I received it, and that was sort of in the moment when I had left graduate school and started as a junior faculty member at the university of Minnesota in the department of African American studies. So I would get students, you know, who disability was at their core and they said to me would you advise me and I said to them, okay, you have to understand you’re going to teach me. And so that was one other thing that I learned from my time at U of C San Diego, that if you’re going to have a really robust coalition, you know, you can’t sort of raise the ram parts of your ego. You’ve got to really be willing to be taught by others. And so when ‑‑ things I mentioned I also said that my own coalition around disability studies was through these students, but also through fellow colleagues by Robert Pruer, Kathy Kulwark who were giving me a kind of language to think about how to have my own interests with disability studies and see disability studies as a really dynamic and ever changing field. So here I am at Illinois Chicago co chairing a search for the research cluster, hiring cluster, that I’m ‑‑ the racialized body cluster and the search is on race and disability. So the task is then to, you know, how do we find candidates around the country who can do and embody the kind of coalitional work that we want to see, both within critical education studies and also within disability studies.
>> I’m thinking about what the three of you said so far, and it’s like the messing of coalition is kind of borne out for me, also how we’re thinking of the narrative if there is a group that created and only after we can create the coalition. And I think it’s happening in between, happening together. The coalition also creates a separation for different groups that continue to develop by reflecting what the difference is between the groups in a coalition. So it’s like the messy part continue to work and create the coalition and separation for a group in the same time.
We will go through the next question. How do you grapple with the issues of politics and power within coalitions? Do you have any specific insight on the subject that could promote better alliances?
>> LEX FRIEDEN: So principal mission, investment and leadership. Those are four characteristics of an effective coalition. You know, people often think they’ve accomplished a lot when they actually are able to define a coalition. Those groups are working together. We are a coalition. But more often than not such coalitions will achieve very little. They may be able to write some letters and represent multiple groups of a process, but as far as making effective change in policies and programs, they won’t achieve very much because they don’t have a common principle, they don’t have a common mission. They don’t have a common investment in the outcome and they don’t have the kind of leadership necessary to move forward consistently. That’s one thing we learned we couldn’t get at the American association of people with disabilities. We needed to have a principle, a mission, a coalition that was invested in leadership. And I’m not sure we’ve achieved that yet with AAPD. The old group, the American coalition of citizens with disabilities, started with people who were not quite as familiar with coalitions. And we had to sort of find our way through it. And one of the ways we did that was by spending a lot of time together, the leadership went to one another’s homes, one another’s communities, and they stayed in one another’s homes. The leadership of the ACCD in the ’70s came to my home in Houston and Fred face slept on the floor. He’s a quadriplegic. He needed help getting dressed and undressed and getting out of bed and off the floor. And the people who helped him were blind and they were deaf. And you know, we learned to work together. The person who provided my personal assistance at St. Louis when we stayed at the home of Jim Lori there was a blind man named Roger Peter son and I had to explain to him and learn to verbalize things I would expect an ordinary person to be able to see. And I learned a lot from that process. And (inaudible) was the blind individual who led our coalition, was a powerful orator, a great speaker, and one time Eunice asked me to describe something to her that we were looking at, and I learned how to provide description to a person who was blind. And that’s helped me throughout my life to articulate scenes better to other people, maybe not who were blind but those who may not have been at a certain place that I was, and I could describe in visual terms what was there. I learned how to sign, even though I can’t move my fingers, Fred Schreiber who founded the national association of the deaf helped me learn to sign only with my hands and he gave me a sign for my name. Jim knows me well enough to understand the sign Fred gave me. It was cheap. Fred had dinner with me a few times, I’m pretty conservative when it comes to the menu. So in any case, we learned a lot about one another. But we learned about our values. And we learned that we have certain principles that all of us had in common. And we dedicated ourselves to those principles, and then we agreed on a certain mission. And the mission had a product. And we also understood that once we achieved our mission, once we had reached the outcome that we had set for ourselves, that in order to move forward, we needed to have a new mission and a new outcome or we needed to disband and that’s exactly what happened to the ACCD. And I think in 1983 after we achieved what we wanted to achieve, the organization disbanded because we never could find another mission that was equal to the one we took in the first place. It was a very important insightful learning experience for me, but I will say this. If it were not for the leadership of first Eunice and Fred Fray and later Fran ACCD would have achieved very little. So you think of coalition, this egalitarian organization, this egalitarian group, and those of us who were social activists seemed to like to talk about egalitarianism so much. But in reality, that organization ‑‑ and I think the other coalitions ‑‑ would have achieved as much as it did going forward as an organization that has strong leadership. Leadership that is respectful of everyone’s views, but leadership who maintains a focus on those common principles, the mission with an outcome, and respect for one another. That leadership must be outspoken, it must be strong, and it must keep the group together, focused on the principles. You know, that’s been my experience, and I suspect there are other experiences people could report. But I’m convinced that the strength of the coalitions, of which I had joined and been a member of, including those that helped to get the UA convention on the rights of people with disabilities, were all firmly based on the shared principle and mission.
>> JIM CHARLTON: So this question asks about insights T so that’s a problem right there, okay? I can’t claim that these are ‑‑ my comments are insights, all right? So I just wanted to make sure everybody gets that. It seems to me that coalition politics revolve or, I would more say evolve, or tend to evolve as a reflection of how the politics of the broader society evolve or revolve. The broader society tends to be more militant or radical or resistant. Social movements tend to do so, and the same way if the world or the local or the social or society becomes more conservative. And I think that that’s pretty much what’s happened in the U.S. disability movement, which I want to say a few words about this evolving kind of politics.
I will use, as I was closing on the last question, the example centers for independent living which I know a lot about. So in the beginning, the philosophy and development of centers for independent living in the U.S. emerged, right, emerged out of the late ’60s, early ’70s, where very many things were challenged, very many things were thought about in new ways, including disability. And it’s not a random fact or something totally random that the centers for independent living and in many ways the contemporary disability rights movements can be dated back to the early ’70s in Berkeley and in Boston and maybe even Ann Arbor. There was something that was going on in those places that helped give rise to something in the disability community. And in those early days, CILs were around from the past and from traditional agencies. The philosophy that we had stress self help, rights, community control, and ideology, the empowerment. And this ideology drew activists or people who wanted to become activists, into centers for independent living networks. Today this is not the case or not as much the case. In fact, many centers for independent living disdain politics. They don’t hire politically active people. They do not have organizers. They have no strategic view of how to make social change. They start at the top. Many executive directors of CILs are apolitical, hired because they have experience in social service agencies, and oblivious to the necessity of social change. Hence there’s very little mobilization of people around race, class, and gender, which seems to me here, again going back, to me so you can’t fight for disability rights unless you fight for other kinds of rights, human rights, civil rights.
Some have demonstrations because they’re outdated or worse because they would alienate funding sources. This is just an example. Those things would never happen in the early 1980s because times were different. But times are different now. And it seems to me the times that we live in today challenge the way in which disability, coalition, politics evolve or revolve. And it seems to me that the greatest challenge to disability rights movement, in some ways is the same, for many other social movements, in the present period, and that is what political line leads the disability movement or leads these other social movements. And here’s why I think social justice is critical. Does a disability rights movement fight for individual rights, which have the size of the individual or does it fight for social justices which emphasizes excluded social groups? So that’s why in conferences like this, the talk about social justice are so important because we need to fight against the tendency, especially the present tendency, to fight only for individual rights when social justice can call into something much broader. Thank you.
>> RODERICK FERGUSON: You know, for me it has to do with the distinction between those groups that are willing to sort of extend what I was attributing to feminism, particularly women of color, feminism, right, and that is the sort of observation of sort of heterogeneity, diversity within the groups, rather than presuming that, again, it’s one monolithic group coming together with another monolithic group which are really about this interest group coming together with that interest group. And I think about, you know, what made for some sort of (inaudible) that were produced at San Diego so meaningful. You know, and so rich is that people were not trying to present a group as a monolith with a monolithic interest that would inevitably westbound in competition with the other group that’s supposed to be in coalition with. So again, kind of uncomfortable with each other’s narratives and also how to share a politics, right? But I think about the groups that failed that I was a part of in terms of coalition, you know, it was like, you know, a monolithic group coming together with your monolithic group, coming together with this monolithic group, not to share a sort of political vision, but to ‑‑ you know, there is strength in numbers so we’ll get our resources and you’ll get yours. And you know, that’s not an alternative model at all. That’s actually nationalism. That’s the UN. That’s game of thrones. That’s actually not what coalition and coalition is meant to be in the sort of productional term of models, forgetting together, for producing a political vision. It’s actually not about your nation state getting together with our nation state, you know, and establishing some multi lateral agenda. So the groups that I’ve been a part of have been the ones that have succeeded, succeeded in the sense of like, you know what? This produced alternative practices, this produced alternative ways of being, that kind of success. Those are the groups that we’re not trying to be the UN. We’re not trying to be the kingdoms and game of thrones, you know. Those were the groups who were actually trying to create a broad vision for social justice. I think I should just leave it there.
>> If anybody wants to turn back to a question that we already asked or comment to each other, so now is the time. And also we can have question from the audience or comments. So the discussion is open. Aly.
>> AUDIENCE MEMBER: So the conversation turned to a really lovely discussion of coalitional politics, but I sort of wanted to turn back to, Jim, when you started, you were sort of talking about inside, outside, oppressed, majority, to sort of speak to the ways that to some degree this is a sort of complicated or ‑‑ I won’t mince words. Are we not producing a sort of binary that is not reflective of the way that certain structural oppression is happening currently, and does this sort of binary between inside and outside not actually prevent the kind of coalitional politics that you guys are talking about?
>> So I will repeat.
>> AUDIENCE MEMBER: Sorry. Repeat that mess. (Laughter).
>> You’re not getting messy on us. So it’s a question for you, Jim, about your binary, outsider, insider. If it’s not creating difficulties to actually communicate and cooperate with each other when we distinct between two groups.
>> AUDIENCE MEMBER: That was a much nicer way of framing that question. Thank you, Nili.
>> JIM CHARLTON: So the way I look at this question of binary is that I don’t think social (inaudible) create binaries. I think binaries exist. I think the way the system is set up, the way in which individual people are valued or devalued creates binaries. I often talk about a kind of ‑‑ I kind of run these together, race, class and gender. I think these are the structures that separate people, separate people structurally. And so I think it’s best politically for coalitions to understand that binaries exist. That’s why I asked in some ways this question of justice for who? Because I think I’m not ‑‑ I don’t care about justice for everybody because we’re ‑‑ the one percent I have no interest in being just. They are unjust, right? So in some ways that’s what I mean when I think of the struggle for social justice involves some people losing the privilege, few are going to lose. And I think that’s one of the problems, it divides kind of an egalitarian radical point of view on social views and social justice with kind of the liberal ones. But the liberal ones see that we can all get ahead, and I don’t think that’s the case. I think sometimes I use the vampire metaphor. Some of you have heard it. Do you go to the vampire and say please, please, Mr. Vampire, stop sucking my blood. Well, the vampire can’t stop sucking your blood because the vampire stops sucking your blood, the vampire is going to die. Right? And so the privileged are sucking the real ‑‑ the one percent or the one tenth, they’re sucking our blood, right? There’s a binary. There’s the blood suckers and the blood givers. Right? So I think there’s a blood letting, all right? I’ve been counseled to stop the blooding.
>> AUDIENCE MEMBER: Thank you very much. This is the first time I’ve had the opportunity to hear professor Charlton speak. I’ve heard professor Charlton speak a lot. And it’s interesting that you talked about groups coming together to coalesce. But the individual got lost, even though professor Charlton is talking about insider and outsider, the individual was lost in this conversation. And it’s always such a touchy subject in disability studies to talk about the individual. And I understand the importance of bringing together a group to support the individual, much like professor Frieden was mentioning being at the stage and having the women come up and later finding out this was an activist group of lesbians. But it ‑‑ I think when I was growing up in St. Paul, I was ‑‑ you know, St. Paul’s ‑‑ you know where I’m going with that. So I was for some weird reason, I was always freaked out. And I’m using the F word in the entirety of its gravity. And then later on I became angry and freaked out. And then later on I became loud mouthed and angry and freaked out. And then later on I had the very good fortune of coming upon a group called Gabriella which is a very, very active women’s feminist group led by Manachka. And she always took great pain. The first thing she ever said to us at one of our meetings or what have you is that your responsibility now that you’re here and you’re new is to become a leader, and as a leader, your first responsibility is to teach somebody else to become a leader. And then as part of being a leader, you have to find those other groups, those other people that drew ‑‑ groups that drew in other people and gave them safety and gave them opportunity to be an individual within a group. And she said just take it from there. And so first we had to be individuals. Then we had to be leaders. And then we could be part of the group. And the purpose of the group was to form coalition. And the major ‑‑ one of our major goals was to stop the male order bride industry which really didn’t take off until people started talking about European male order brides. But that was okay‑ish, to get to ‑‑ to start to get to where we needed to go, we had to become a parasite on the (inaudible). Never lose the individual.
>> JIM CHARLTON: Yeah, no, I can ‑‑
>> Do you want to ‑‑
>> RODERICK FERGUSON: Sure. So the question has to do with what is the place of the individual within a sort of coalitional imagination and politics, right? We talked so much about groups, you know, as the sort of main actors of coalitions and what is the status of the individual in this discussion. And so I would say that you’re absolutely right in terms of coalitions have to have ‑‑ have to also be about a personal transformation, you know, at the individual level. So what I was saying, you know, for instance that one of the things that the coalitional movements and formations in San Diego taught me was to become a different type of, you know, really ethical and political subject, an intellectual subject, so that was a very personal transformation that is part of, as I read it, the day to day of every good coalition, right? That like I’ve got to ‑‑ you know, there’s something transformative happening to me in this moment, through this project of coalition. I am thinking about connection that I never thought about before. There’s this wonderful moment in Barbara Smith’s anthology, black feminist, where a group of black feminism feminists are getting together and talk about these issues that we’re talking to them, right? And the day before there was a ‑‑ this is like 983 ‑‑ the day before their discussion, there was a protest at the UN around (inaudible) proliferation, so protesting for nuclear disarm amount. And one of the things Smith said and I really am just moving profoundly gets at what you’re talking about, how do I make nuclear disarmament into a black issue. So part of what she’s saying, what does it require for me to turn my attention to this issue to make it my cause, right? So she’s getting at a question that is about personal transformation, the shift at the level of the individual, things I didn’t care about before, I didn’t think of as my issue now become mine, right? So in many ways, the best coalitions do, you know, act as kind of technology that you change the person, and change the individual so that again, you’re producing associations that did not exist before. I’m a different type of reader, acronym.
>> JIM CHARLTON: Well, thanks for the question. So it seems to me that social justice movements have to embody social justice themselves. They have to practice, right? And so I wanted to kind of restate what I thought the state or condition of social justice was, but I quoted from Terry Eagleton’s book where he says that social justice has to be about equality, equality insofar as attending to peoples or individuals’ different needs, right? Attending equally to different ‑‑ to individuals’ different needs. So it’s not like treating everybody the same, but it’s attending equally to other people, not only now in the social and society, but also within the movement. So I think that the only way that the movements are vital and are sustained is if individuals feel comfortable in them. And that individuals feel like they’re getting something from those experiences over time because for the most part, social movements don’t win anything really quickly, right? So how do people stay in it? Partly it’s kind of a commitment to politics, but it’s also partly that they feel like they’re being treated with respect inside the social movement.
>> RODERICK FERGUSON: Part of this, you know, the answer to this is also to extend ‑‑ you know, again another element of feminism, and that is the element around the autonomy of the person, right? You know, so there’s that famous quote from Michelle Wallace where she says you guys talk about unity, unity, and I always had the sense of ‑‑ my senses that my ass is going to be the first to get kicked, you know, and so part of what we have learned, what we can learn and extend from feminist movements is the autonomy of the person, as you say, the individual, to invent him or herself and that they’re all ‑‑ that space of invention has to be protected, right? And rather than regulated, you know, which is also characteristic of many of the social movements that we talked about. So part of the answer, it seems to me, has to be in reviving and extending the feminism’s emphasis on autonomy and the autonomy as the subject.
>> AUDIENCE MEMBER: I kind of have a question regarding the ADA specifically and the 25th anniversary. So Mary Johnson makes a case that the ADA basically established entitlements and not civil rights, that the law didn’t go far enough in terms of a national dialogue. And I’m wondering if kind of in accordance with justice delayed is justice denied, if we celebrate the 25th anniversary of the ADA, are we hoping to ‑‑ I don’t know what a corollary would be for a white wash, but are we hoping to white wash the failures that come with it? Is anybody critically engaging with the failures of the ADA?
>> Can you come here and ask your question? It’s a question about initiation of the ADA. You also have specific, so ‑‑
>> AUDIENCE MEMBER: Do you want me to ask it up here?
>> Yeah, I would just tell you to repeat the question. Sorry.
>> AUDIENCE MEMBER: Sure. So Mary Johnson makes the case that on the ADA basically established entitlements and did not broaden the discussion really effectively towards civil rights. And I’m wondering if celebrating the 25th anniversary of the ADA is effectively white washing that ‑‑ its failures, that justice delayed is justice denied, that we’re celebrating the denial of justice to Americans with disabilities?
>> LEX FRIEDEN: It’s okay to expand a lot of areas and a lot of people are affected by it. In fact, the whole society is affected by it. And if ‑‑ you know, I don’t know what age you are, but you’ve obviously grown up during the period of significant social and environmental change related to people with disabilities. Those of us who are old enough to remember how things were before 1990, I think all of us can tell you examples of the radical ways in which our society and our communities and our environment has changed. Before 1990 I could apply at a job and an employer could and frankly did tell me that I wasn’t qualified, and they made that judgment simply by looking at me and determining that I used a wheelchair. Employers are less likely to do that today. Now, there may still be discrimination, but it’s certainly not as overt as it was then. It’s been conditioned differently. And obviously with women is one area where we need to make more progress. In that regard, let me just point out that the ADA has no affirmative action provision. So in that respect, it’s not equivalent to the end of the civil rights act of 1964 or to the section title 5 of the rehabilitation act of 1973 which did include an affirmative action provision. In fact, that affirmative action provision under section 503 is now effectively being used in some local and state jurisdictions to increase the proportion of people with disabilities who are unemployed. In thinking about the coalition in some of the discussion that I’ve heard here, particularly back to Rod’s original reference to the movement for equality by certain groups that didn’t used to have challenges, one thing that we observed among African Americans after the civil rights act and particularly in the late 1970s was that there seemed to be systematic effort by intellectuals to bring people who ‑‑ people of color into the employment offices of businesses and corporations. So there’s a period of time in late 1970s and early 1980s where you can actually look at the racial composition of people working in and needing employment. HR offices and corporations across America, and see that an unusually high peak of employment in those offices by African Americans who one would think might naturally be inclined not to be prejudiced on the basis of color. And I think that actually proved to be the case. So I think many people of color were actually hired by large corporations and others during the late ’70s and the early ’80s. Maybe that continues today. I don’t know. But we observed that early on, that that kind of almost strategic placement ‑‑ and I don’t know whether that was intended plan or just happened coincidentally. I doubt it. These are the kinds of strategies, though, that I think people with disabilities and the disability movement has failed to exercise. We haven’t really placed the value on getting people with disabilities strategically placed in certain organizations, and when you think about HR when it comes to hiring, it’s a pretty strategic place to be. So obviously ADA has not achieved everything we intended for it to achieve. But it’s achieved a whole heck of a lot. And I don’t think it’s a shamble to celebrate the progress that’s been made since 1990 in the integration of people with disabilities in our communities and into our society. What we’ve been able to do since 1990 is actually create benchmarks along the way so that we can see a major progress and we can see a major failure. And that gives us the opportunity to target strategies that will enable people to have housing. We know, for example, right now that one of the main reasons homestead is not being implemented the way it should be is that there is a lack of housing in the community that will accommodate people with disabilities. And the second piece of that is an absence of personal assistance services. These are issues that the disability movement needs to focus more on. Some already are. Chicago is a good example. We have Jim and others there to focus on housing but made some progress, but I don’t think as much as they would like at this point in time. Other communities are far behind. Again, let me just (inaudible) by saying I think we should celebrate the ADA for what it’s achieved and use the opportunity to point out the gaps that we still have that we need to target.
>> JIM CHARLTON: I think this is a great question, so thank you for raising it because it’s a very unlikely question, why wouldn’t you celebrate the ADA. And I’m going to say I’m somewhat ambivalent about it. Lex is much more robust than I am about this question of celebrating. I think in many ways what Mary Johnson raised or what you called attention to what Mary Johnson raised is pretty interesting. But I think there’s a difference between limitations and failures, right? And they use both those words. Clearly ADA is limited, but I wouldn’t sum up that because it’s limited, it’s failed. So I think there needs to be some perspective about it. And then also the way in which activists understand this ADA and other entitlements, fair housing acts, 504, all of these kind of legal mandates, flows out of the way in which the movement itself or sections or groups within the movement itself celebrated their passage in the first place. And you will get this, for instance, way in which people even talk about these legal mandates that X or Y legal mandates guarantees blah blah blah. And you know often you hear people talking about the ADA, that the ADA guarantees X, Y, and Z. Legal mandates don’t guarantee anything. And if you think they guarantee it, then you will sum up that they were failures. To me it’s social progress, and this is the case that this community people with disabilities amongst other minority communities primarily and overwhelmingly flow from social (inaudible). They don’t come out of legal mandates. And so when social movement, social struggle is high, there’s a lot of progress. And when there’s an ebb, that progress either wanes or there’s retrenchment. I mean, we can see this from (inaudible), for instance, that there’s no take backs. So just because you win, you don’t always get to keep it. So I would say A, that there’s limitations, but I would ‑‑ I think it’s wrong to call it a failure. There is a question of expectations of individuals within the movement, within the community, about what legal mandates can accomplish in and of themselves. I think social progress is primarily the product of social struggle. Organizations, social movements, et cetera. And I think that celebrating the ADA is a challenge. Like how do you do it? Do we say things are hunky‑dory? Well, they’re not, so everybody knows that. Even the most people, most enthusiasm about the ADA wouldn’t say that. Can we say that there’s been a lot of progress over the last, well, 1990 or over you periodize it? Yes. But how much of that do you attribute to the ADA? And among us, because I know almost everybody in the crowd, I can say that we’re kind of talking to each other about this. I wouldn’t really say this to a public forum of 500 people where I would say I’m ambivalent about the ADA because then they would ‑‑ people would take that as I’m being critical of the ADA. I think the ADA was an advance. But there’s limitations to it, and I also think that this idea the legal mandates guarantee social products is very, very problematic. So limitations, yes. Failure, no.
>> If I can only add something on the subject, to add to your question, does the discourse of right can take the attention from other alternative for the movement and can construct for the movement only one approach to struggle and kind of put boundaries, narratives to other narrative that can promote the movement to other direction? I think it’s a question, not to ‑‑ to ask in a discourse of civil right or this movement is important or succeed or fail, but to ask is it put too much restriction to alternative politics and to social justice that go beyond social rights. I don’t know if you want to react. It’s just something that I want to put out. Other questions? Other comments? Thank you very much. It was very ‑‑ I want to thank the three of the speakers for joining us today for this conference. And also for the audience. Thank you very much. And I do hope you will stay for the next panel, the last panel, that we finish the conference with. So we have a break and we will return. Thanks. (Applause.)
(End of keynote presentation.)